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StatCan facilitates the identification and trackability of SUDEP cases

This is a major first step towards determining the incidence of SUDEP in Canada.
In response to requests for Sudden Unexpected Death in EPilepsy (SUDEP) mortality data, Statistics Canada has implemented the use of a unique combination of ICD-10 codes to help identify SUDEP cases within the Canadian Vital Statistics - Death Database (CVSD).


The CVSD contains demographic and medical (cause of death) information from all the Canadian provincial and territorial vital statistics registries.  Cause of death within the national CVSD is classified according to the World Health Organization’s international standard for reporting diseases and health conditions.

Death certificate cause of death data is currently being coded under International Classification of Diseases revision 10 (ICD-10).  This has now been superseded by revision 11 (ICD-11), released in June 2018, which introduces a code specific to SUDEP that has been absent in earlier ICD classifications.  Given the technical adaptation, testing, migration and training required in switching to ICD-11, it could be several years before the update is operational and the SUDEP code available in the CVSD. 

Statistics Canada’s use of a unique combination of ICD-10 codes to identify SUDEP is the first major step towards determining the incidence of SUDEP in Canada.  The ability to readily identify cases is crucial for researchers trying to better understand and prevent SUDEP.


SUDEP is the most common epilepsy-related cause of death.  It refers to the death of a person with epilepsy without warning and with no explanation found at autopsy.  Research estimates 1 in 1,000 people with epilepsy are lost to SUDEP each year and 9 in 1,000 for people with frequent seizures that are poorly controlled with medications.


“This initiative from Statistics Canada is a significant move forward in our endeavour to gather accurate and reliable epilepsy-related mortality data across Canada.  Cases will be more readily identifiable for researchers studying SUDEP and the dataset more complete,” says SUDEP Aware co-founder and executive director Tamzin Jeffs.


“SUDEP Aware has been in discussions with Statistics Canada for the past three years about obtaining SUDEP statistics in Canada, so we are very pleased with this response and grateful for their assistance.”


The coding of SUDEP deaths is just one barrier of several to the identification and reporting of epilepsy-related deaths that exist, posing challenges to death investigators that lead to the under-recognition, and consequent underestimation, of cases.


To help address this issue, SUDEP Aware submitted a petition to Health Minister Ginette Petitpas Taylor requesting the federal government mandate a standardized methodology to measure, investigate and report SUDEP across Canada. The response, released May 27, is available here

SUDEP Aware also submitted a supplement report to Health Minister Ginette Petitpas Taylor, which provided more background information than the petition's 250 word limit permitted as well as details regarding the barriers and challenges of SUDEP in Canada. This information is available here.

30 April, 2019

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